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Advance Directive Warning
approx. 1:30 AM Saturday, December 18, 2010
“I think I need help!”
Mom is standing by my bedroom door gasping and crying in pain. She says she waited for an hour to wake me up.
(Anecdotal: When I came over last night, my mom told me that sometimes she feels “down” at night. Knowing that she had a heart attack a few months ago, I was praying that if it happened again, be there.)
We call 911 and I give them the information. They tell me to make sure pets are secured and the door is unlocked. I say: “I can’t leave my mother’s side.”
10 minutes later, I call 911 again. “They’re at the door,” says the dispatcher.
There are two paramedics and four firefighters, including the captain of the fire department. Some bring first aid, others ask about the mother’s advance directive. I find it and note that it doesn’t say don’t treat him.
We arrive at the hospital, a medical, research and educational institution. Dr. C (cardiologist) and Dr. N., as well as many other staff, visit the mother.
They are very concerned about his Advance Directive. Again, it doesn’t say if she’s not in a coma, don’t treat her, and she’s not.
“He is very, very sick,” they say. “What does she want?”
Crying, I tell them, “I know what she wants. She’s so happy. She loves life. She’s going to my brother’s house for Christmas. The grandchildren are coming to visit next month. She doesn’t want to go. Anywhere.” “
I show one of the doctors the part of her Advance Directive that says she doesn’t want to be kept in a coma or vegetative state with no hope of recovery. “He is not in a coma,” I say. He stares meaningfully at her motionless form attached to the machines.
If I had my wits about me, I might say, “If they brought in a 20-year-old football player who had just had a massive heart attack and you were on morphine, you’d think how alert he would be. And would you be so quick to fire him? But I can’t form these thoughts, let alone express them. I just feel that there is something wrong with the doctor’s reasoning.
They discuss the possibility of surgery to save his life.
I call my brother Jamie and his wife Shelly (nursing nurse). Shelly thinks mom will die without surgery. Doctors do the same. Jamie and I will let you.
Jamie and Shelly arrive at the hospital.
Doctors decide against surgery. Very dangerous. We agree.
Dr. N. wants to discuss options right there, in front of mom. But I have read that comatose – or comatose – patients sometimes give up and die when they hear a negative prognosis.
I say “not in front of her” and we go to the quiet room. Dr. S again explains that surgery is not an option. We agree.
Dr. N. wants to stop medical treatment (IV drugs). He tells us about an experience in medical school where the professor was making it difficult for the students to breathe, and he shares his horror. She believes she is suffering and is certain she will “never regain cognitive function.”
I want her to see her grandchildren and great-grandchildren, some on the way and others here in town. “He does not know them,” says Dr. N.
“Are you sure?”
He is confident.
She talks more about how she is suffering. I don’t remember the wording, but I’m sure there was some indication that she was already in a vegetative state.
Jamie and I will allow medical treatment to stop because mom will likely suffer and never regain cognitive function. Just before giving the final go-ahead, I look to Heaven for wisdom, and I’m sure the answer I hear is yes.
They keep the same amount of blood thinners but reduce the amount of medication that keeps the mother’s blood pressure down.
[I’m calling what happened next a miracle, but may never know, at least not in this life, how it happened. Perhaps Dr. C. didn’t want to disagree with Dr. N. in front of us, but quietly went ahead and did what he knew was right. Or perhaps–and this may be more likely–they maintained the one medication and only lowered the other one in order to give Mom a quiet passing, without another cardiac event that would clearly upset the family. However it happened, I believe that I heard “yes” not because it was the way to go regarding treatment, but because the answer satisfied Dr. N. and made way for what followed.]
Mother’s blood pressure decreases. We gather around to sing and pray. Through her mask, the mother says: “I have a lot to be thankful for.”
“Thank you for being here with me,” he says to each of us—Jamie, Shelly, and me.
“I love you, mom,” I say.
“I love you too,” she replies.
We read the 23rd psalm. When we get to the topic, “Surely goodness and mercy shall follow me all the days of my life,” my mother chimes in. (He will remember this later).
The chaplain sings mother’s favorite song “You Be My Vision”.
We sang “Amazing Grace” and “Jesus Loves Me”.
I read John 3:16 (“For God so loved the world…”) and John 1:12 (“As many as received Him…”).
“I can’t speak very clearly,” Mom apologizes through the mask.
“Yes you can,” I counter. “You just said I can’t speak very clearly.” “She laughs. (Mom remembers this later.)
We see that the mother’s blood pressure stabilizes and then begins to rise. My cousin is coming. Mom thanks him for coming. His sister is coming. She and her mother talk briefly.
Jamie and Shelly’s friend arrives. They joke that the last time he visited her at the hospital, he brought her a bed by the window.
The mask is uncomfortable and no amount of adjustment can fix it. The workers replace the masks with poles.
Mother sits and talks freely. I’m kidding. He laughs and the monitor shows deep breathing.
She wonders why everyone is so upset (which she remembers later) and… can she have breakfast?
After tea with toast and jam, the mother is transferred upstairs to the cardiac ward. My husband, my daughter and our son will come. The mother is happy to see them, but sorry to have worried them. Another one of our girls is on the phone and she is having a nice conversation with her mother. Mom is happy, but a little disappointed that my brother can’t access the family’s Nicaragua connection on Skype.
He never regains cognitive function… he doesn’t recognize them.
Later in the afternoon, she moved to another ward. “I had a wonderful time,” Mom says as we leave for the night.
On Sunday, Mom enjoys visitors and a newspaper crossword puzzle.
On Monday, Dr. A, another cardiologist, will visit. I ask him, “If a 90-year-old man had a heart attack like his mother did, would you say that he would never recover cognitive function, just because of his age and the severity of the attack?”
He seems surprised by the question. “Total loss of cognitive function? Did someone tell you that?”
Yes, I will answer without details.
No, he replies, he didn’t foresee it. In fact, mom can be home for Christmas and have to live in the same situation.
In the afternoon, he and I enjoy a Christmas carol concert at the hospital.
That evening, she proofreads her grandson’s introduction to his PhD thesis. He found a few minor errors and is looking forward to reading the paper when it is finished. Mom wonders if the picture of the man my cousin is writing about might be helpful. He found it on the Internet last year, but doesn’t remember the website. I will note the suggestion on my nephew’s paper.
Mom writes Christmas checks to the grandkids and great-grandkids and asks Jamie to bring in the crossword puzzle tomorrow.
he doesn’t know them
On Tuesday, a medical student informed us that there had been no serious new damage to the heart since her mother’s second heart attack.
The mother will be discharged on Wednesday afternoon. She delivers thank you cards to the cardiac department and the emergency department.
Pity the poor employee in an emergency. Although the mother gives her the card in a greeting envelope, the woman thinks it is her health card. (Do you think they might not receive thank you cards in an emergency?)
My concerns with the Advance Guide, at least as we wrote it, are:
1. A doctor who is a supporter of early termination of the elderly (my term) may interpret terms such as “in a coma”, “in a vegetative state” and “no heroic measure” in a way that neither we nor our loved ones . wanted
2. On a slightly different note, I have a friend who watched his father breathlessly. Staff may have interpreted the previous verbal instruction not to use a feeding tube to mean “no intervention”; so they ignored my friend’s plea for oxygen. She finally called 911 and paramedics gave her father oxygen at the hospital. He died a week or so later, apparently in relative peace.
We will never know if the man was allowed to suffer as he did (which is not proven) because the staff truly believed that there was no oxygen on any of the feeding tubes, or if they simply felt that he was an old man. , who has advanced Alzheimer’s disease. had come
My own father died in this palliative care facility. He was given “no heroic measures” and was given both a feeding tube and oxygen, as well as pain medication. I believe he died in relative physical comfort. Maybe it depends on who is working that night or if the patient has Alzheimer’s or who is with them at the time. The father’s mind remained clear and he was able to communicate verbally and in writing until he fell into a terminal coma. In addition, her very alert geriatric nurse daughter-in-law was by her side, along with others.
I once spoke to a nurse who said she refused oxygen to patients who pointed to a mask and clearly asked for it, because of advance directives. He said he just held these people and tried to comfort them as they died.
It seems that even a carefully written advance directive can cause needless suffering and premature death.
The way my brother and I are considering is just a list of agents with full contact information so that a decision can be made at this time.
In any case, we must be very, very careful when our loved ones cannot speak for themselves.
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